Living in Constant Fear

“I lived in constant fear that the lipodystrophy would identify me as HIV-positive.”

In 1994, at the age of 26, Amit Dixit was diagnosed with advanced AIDS. At the time, his father did not want to tell anyone in their South Asian community. He feared that AIDS would be a mark on his family and would make it more difficult for other family members to get married.

Fortunately, Amit received good treatment for his HIV, and today, at the age of 46, his HIV disease is stable.

However, due to his life-saving antiretroviral medications, Amit developed lipodystrophy. He experienced abnormal fat growths under his chin, known as a “horse collar,” and at both sides and the back of his neck, known as a “buffalo hump.” He also had acute fat loss in his cheeks.

Lipodystrophy had a devastating impact on Amit’s life. He couldn’t sleep because of the “buffalo hump,” and it distorted his normal body shape. It was always visible to others – people stared at him as he walked down the street, resulting in social isolation and depression. “I lived in constant fear that the lipodystrophy would identify me as HIV-positive,” Amit says, “especially in my South Asian community, where HIV is even more stigmatized than in Western society.” He stopped attending Indian community celebrations such as Diwali, the Indian New Year, which his friends and family have attended since his youth.

Amit twice sought surgery to treat his lipodystrophy. And twice, his insurer, Harvard Pilgrim Health Care, denied his doctor’s requests for prior authorization. He despaired. He didn’t appeal on either occasion – the appeals process was daunting, and he had no idea what to do in order to get the denial of treatment changed.

He began seeing a psychologist due to the depression and anxiety he was experiencing, which Harvard Pilgrim did pay for. Understanding that the key to treating his depression and anxiety was treating his lipodystrophy, his psychologist encouraged him to try again – and this time, to seek out a lawyer to help him.

Dr. James May, a surgeon at Massachusetts General Hospital, submitted a request for prior authorization for treatment, which Harvard Pilgrim denied for a third time. But this time, an attorney at Gay & Lesbian Advocates & Defenders took his case for free. Amit’s lawyer spent countless hours on the appeal, interviewing Amit and working with his HIV doctor, psychologist, and Dr. May on their letters of support. The lawyer wrote a brief citing 15 medical journal articles verifying the harms caused by lipodystrophy and made legal arguments about why treatment for lipodystrophy should be covered by Amit’s insurance.

Within a week of submitting this appeal, Harvard Pilgrim called to tell Amit that they would pay for his treatment.

Treatment has changed Amit’s life; he feels like a normal person again. But he also knows it’s not practical for every person who needs treatment to get the kind of help he got; he was fortunate his case was taken up for free, because like most people, he wouldn’t have been able to afford an attorney otherwise.